Predator vs. Alien

Since finding out about Colin’s blood clot, we have settled into a normal non-medically intense lifestyle punctuated by the possibility of crisis. On Superbowl Sunday, Colin became inexplicably agitated and then very spaced out, eyes unfocused and suddenly falling asleep sitting up. The pseudomeningocele on the back of his head had become an even larger, tightening mass of fluid.

We rushed Colin to the emergency room at Le Bonheur and he got a stat CT scan, bumping a baby with a silently weepy mother who doubtless wondered what concerns could supercede her own. I can only hope that her emergency was temporary and she will not become a frequent flier in radiology. I was never much of a crier in the first place, but she looked like a novice to me; for her part, I probably looked too calm for there to be a real emergency.

However, having unscheduled scans done is something we are used to from our time in New York, and in Memphis I now know where they keep the lead aprons in the CT and x-ray rooms (at both St. Jude and Le Bonheur, though the latter usually performs our urgent scans), slide one on, and perfunctorily declare, “No chance I’m pregnant” so the radiologist will get to the business of conducting business. I have long since abandoned pregnancy-related jokes which were not very funny in the first place.

It’s neither callousness nor lack of humor generally, but the lurking thrombosis has transformed our former concern about the weather patterns in Colin’s head to a fever pitch. This became evident when the resident came out and declared the ventricles fine and the pseudomeningocele larger. No imminent shunt problems, he seemed happy to report.

I became incensed. What about the blood clot? Oh, he has a blood clot? Where, his leg? No, in the middle of his f***ing head! (Superior sagittal sinus, to be a bit more precise.) 

The resident disappeared and, after a while, came back and reported that the thrombosis didn’t look any bigger and, if anything, was less opaque.

Becoming a Bad Patient?

This incident demonstrates many things, including the embattled existence of residents, who are overworked and have limited knowledge and experience yet are in the front line of medical care. For a patient like Colin, these issues seem especially dangerous, though it is the very effort to remedy both of these things that puts them in the line of fire.

My impatience and frustration are on the one hand understandable and on the other hand petulant and potentially destructive to my relationship with the doctors charged with caring for Colin. At the moment, an outburst may achieve a particular goal (in this case, getting the resident to look at the area of concern on the scan) yet may erode one’s ability to work with the medical team.

These are not clearly iterated issues, and probably most practitioners will not admit that they exist, but they are palpable within the ebb and flow of medical transactions. Getting labeled as one thing or another as a patient can work in one’s favor or detriment, but especially in a realm as vague and difficult to delineate as neurology, there is a tremendous risk to not being heard.

Problems within the skull tend to have a wide variety of symptoms and may indicate relative slow-moving problems or more critical ones. The diagnosis and impetus to get a more comprehensive assessment are based on clinical assessments that generally take place outside of a hospital.

As Colin’s parents, we are responsible for noting changes and identifying those that may indicate a bleed, stroke, or expansion of the clot. The shunt malfunction is more of an afterthought because it is generally a less urgent problem, as we discovered after Colin’s most recent surgery.

Of course, one doesn’t want a tragedy happening to one’s child, but I also spent two nights at Le Bonheur concerned that the neurosurgeons thought I was crazy. Colin had an EEG performed the day after we visited the ER that was thankfully normal. The symptoms were not suggestive of a seizure, but the doctors ordered the test to confirm that we didn’t need to start giving Colin anti-seizure medication.

The neurologist attending physician did not have any explanation for the incident. However, the continued growth of the pseudomeningocele suggested an intermittent shunt malfunction in any absence of any other ideas, he said. This idea plagued me during my time in the hospital because I knew that it would be difficult at best to tease out a diagnosis and decide on an action.

Can You Hear Me Now?

I also understood that having the neurosurgery team listen to us and our recounting of symptoms and any further incidents would become only more important. Furthermore, our second trip to the ER at Le Bonheur in less than a week made me nervous to think that there was potentially something going on.

With more questions than answers, I was both eager to get out of the confines of the room at Le Bonheur (which I literally left four times to get coffee across the hall) and nervous about the prospect of having to make another round trip and possibly missing a problem with my child. On top of general concern about his health, I had radiation on my mind and the need to begin therapy.

On the second morning, Dr. Boop stopped by again ready to release us back into the wild. He clarified his opinion that the incident on Superbowl Sunday was not an intermittent shunt malfunction, since the production of CSF within the brain is too slow at Colin’s age to generate such an abrupt change in symptoms.

What was it? He had no idea, but he also added that he believed it was “something.” Reassuring as it was to hear this, I also reacted strongly when Dr. Boop affirmed how this situation could generate anxiety.

True as this may be, what sends us to the emergency room is an identification of clinical changes, not an emotional reaction to the awareness of the clot. First, we need to know what those clinical signs are and what their implications are. Second, we need the team to listen to us and feel that our reports and opinions are accurate and useful.

The idea that anxiety rather than logic drives our clinical assessments of Colin is dangerous and potentially impedes our ability to work with the neurosurgery team. I clarified that concern urgent enough to bring us to the emergency room is born of observations and real clinical changes, not panic.

The Plan Obviates the Problem

Perhaps the most reassuring and practical accomplishment of the latest visit to Le Bonheur was the clear establishment of the specific risks that Colin faces and our protocol in having him assessed. Now, we have the system down: drive to Le Bonheur, call the on-call St. Jude doctor to pave the way, and get a quick assessment of the critical issues. If this happens again, in the absence of other concerns, we will probably be able to go home after the CT scan is done and skip the observation phase.

Now that we have a good and solid plan, we haven’t even come close to being concerned. Dr. Boop had said that the pseudomeningocele, now that the cavity there exists, will wax and wane. At the time he mentioned this, I added that I had only seen it wax since the shunt revision had been done and deflated it before.

However, like magic, the pseudomeningocele has since virtually disappeared. We have had little cause for concern in that department, and though it is an undesirable complication of surgery, it is convenient to have it available as a quick gauge of what is happening in Colin’s head.

Stranger in a Strange Land

Colin has only been doing better and better. Everybody remarks on the soft dark hair that his grown in, and his eyelashes and eyebrows are fully restored. In so many ways, he looks not just better but like a normal healthy child.

Like other children his age, Colin is becoming a chatterbox, though he can’t vocalize very effectively. His “spoken” (with vocalization) vocabulary has expanded a bit, and we recognize more words like “mine,” “more,” and “bye.” In addition, he mouths individuals words and full-on sentences. These are near to impossible to decipher.

In the absence of a reliable voice, Colin often grinds his teeth, generating a squeaking, clicking sound reminiscent of the Predator (the action/sci-fi movie starring Arnold Schwarzenegger). He usually does it when he’s happy, especially when he’s expressing love.

Colin is like a sentient alien on our planet, and the more time goes on, the more we realize he is very with it. The Predator movies are predicated on the idea that these aliens hunt humans for sport and are much more sophisticated and savvy than we imagine based on their appearance and, well, the fact that they’re hunting us and not very concerned about us “getting” their culture.

Just because Colin doesn’t talk doesn’t mean that he couldn’t if he didn’t have physical limitations or that he doesn’t understand everything going on around him. For months, he was a limp puddle and so unresponsive to even negative stimulus that we got used to thinking of him as babylike.

Colin’s level of awareness has also improved and he is keenly aware that he is not a normal healthy boy. He worries about whatever is wrong with his head that has turned his body and his life upside-down. He often points at his head not because it hurts but because he is puzzled about this thing that happened to him that also happens to other children.

Before surgery, he gently touched the scar on Belle’s head and has a special affinity for her that we have remarked upon. More recently, he looked at another of his SJYC07 (the “baby brain” protocol) peers, Haley, and pointed at his own head, frowning. I asked him if he wanted to know if the doctors were helping Haley with a boo-boo in her head, too.

Immediately, he wanted to hold her hand. The sentiment was sweet but it is also easy to see that, even at this age, the children feed off of the knowledge that they are not alone. Having no hair and big scars and various deficits is normal here. He will be sensitive to how people look at him when we return to the “real” world.

Trotting around in the wheelchair, he looks pretty fine nowadays. When we see somebody he knows, I often induce him to walk to show them how great he’s doing, and everyone here beams with joy. In public, he looks freakish compared to a normal two-year-old, between the trach and the growing-in hair. Radiation is going to give him a rad and very uneven hairstyle that he will probably know looks weird outside of these walls.

We are discovering that our little Predator is part of a previously unrecognized Predator culture. Most of the other kids can talk rather than click and squeak, but there is still something different about them that I thought was only apparent to adults but is also discernable to the children. At least for some of them, there is more value to their interactions than just seeing peers.

The popular Predator and Alien movies generated an unsurprising versus match of the two against each other. Each child being treated here has a lurking Alien that science is attempting to keep at bay or destroy. If this were a matter of will or determination, there would be no question of which extraterrestrial would win.

Complicated Colin (The Radiation Version)

In a long string of unsurprising unusual events, Colin’s radiation therapy has gotten delayed… and delayed yet again. Originally scheduled to start on Thursday the 18th, then rescheduled to start on Friday the 19th with verification films, it is now slated to begin on Wednesday the 24th.

The issue, according to Dr. Merchant, is that the plan is especially complicated and taking longer than necessary. With the memory of the expose from The New York Times fresh in our minds, we are long on patience though still of course anxious to get Colin into therapy.